Tips for Transitioning a Juvenile Idiopathic Arthritis Patient to Adult Care

Sep 09, 2019

Better communication between pediatric and adult rheumatologists is especially important as pediatric patients with juvenile idiopathic arthritis transition to adult care.  In this Q&A, we revisit a Rheumatology Nurses Society annual meeting presentation made last month by Cathy Patty-Resk, MSN, RN, CPNP, a pediatric rheumatology nurse practitioner with the Children’s Hospital of Michigan.

Juvenile idiopathic arthritis affects a significant number of children in the United States, and many of these patients will continue to need care for their condition after they no longer see a pediatric rheumatologist. However, many adult rheumatologists are not as familiar with this juvenile-onset arthritis, making caring for these patients more difficult.

Better communication between pediatric and adult rheumatologists as these patients transition providers can pave the way for better long-term care. In a presentation at the Rheumatology Nurses Society annual meeting last month, Cathy Patty-Resk, MSN, RN, CPNP, a pediatric rheumatology nurse practitioner with the Children’s Hospital of Michigan, discussed the importance of helping adult rheumatologist understand the specifics of juvenile idiopathic arthritis.

In this Q&A, Ms. Patty-Risk discusses the highlights of her presentation.

Juvenile idiopathic arthritis is considered an autoimmune condition of childhood, so why should adult providers learn more about it?

“It’s important for adult clinicians to have a better understanding of this condition because there’s a common misconception that juvenile idiopathic arthritis is the same as rheumatoid arthritis. When I talk to many adult providers, they don’t really understand how the condition is different from the rheumatoid arthritis they see. Many of them want to have a better understanding of JIA. Many of these patients will continue to need rheumatology services as they age, so adult providers need to have a firm grasp of the struggles that exist in pediatric rheumatology, particularly with medications we have available to us.

According to the Arthritis Foundation there are approximately 300,000 children in the U.S. with juvenile idiopathic arthritis. We know only approximately 25 percent of those children are receiving adequate rheumatology care for their arthritis. A lot of that has to do with the lack of pediatric rheumatology services available to children in the U.S. There are currently over 50 pediatric rheumatologist positions available.”

What can help adult providers have a better understanding of how juvenile idiopathic arthritis is different?

“A lot of time adult providers get caught up on the classifications we have of juvenile idiopathic arthritis, such as pauciarticular, oligoarticular or polyarticular juvenile idiopathic arthritis. It would be helpful for them to throw out the word that precedes ‘juvenile idiopathic arthritis’ and think of the condition as its own entity, as something different than a condition found in adults. Psoriatic arthritis and spondyloarthropathy are much more like what they see in the adult world and PolyJIA is difficult to treat and get into remission much like RA.

Juvenile idiopathic arthritis is much different from rheumatoid arthritis. There are children that actually have rheumatoid arthritis. They are rheumatoid factor-positive. They have rheumatoid factors that are at least 30 and up, and they have high cyclic citrillunated peptide, as well. Those are true rheumatoid arthritis kids. Those kids will have the more aggressive, erosive type of arthritis like adult rheumatoid arthritis.

The children with juvenile idiopathic arthritis can present with just one swollen digit - a finger or a toe - and it can be very subtle. They can also present with just having jaw pain that would be from their “TMJ” as they say, or they could come in complaining of multiple joints being affected. I think the adult providers would be very surprised to know how much TMJ arthritis and spondyloarthropathy we see.”

What are the misses or the traps that the adult provider could fall into during that first visit with a patient who has juvenile idiopathic arthritis?

“One of the most important things for the adult providers to know is how old was the patient when he or she was diagnosed, what joints were affected at the time of diagnosis, and a general history of their disease and medications used. They should know what medications the patient has tried and why those medications were discontinued. Did he or she have a reaction, transaminitis, psychological stress due to route of administration or was there a failure of efficacy?

In the pediatric world, some of that problem falls on us with the way we transition our patients. We don’t have a standard format or form that’s used in transitioning our children and every pediatric institution’s process is different with what documents, if any are sent over to the adult providers.

In the perfect world, we would have a standardized form that the pediatric rheumatology practitioners would fill out to include the history, medications, and all the information that the adult rheumatologist will need to know about that patient. When our pediatric patients start the transition to the adult world, their parents are no longer accompanying them. Since they were diagnosed as children, these young men and women really weren’t paying close attention to what was happening. They were trying to get through the stress of the clinic visit; wondering if they were getting poked for labs, if we would keep them from playing their favorite sport or instrument or if we were going to put them on steroids right before their prom because they knew they were flaring. So these young adults might not know their exact diagnosis name, why they started or stopped a medication, or even most of the details about their treatment.” 

In many cases, when the adult provider looks at these children, they can see patients who may not be as well controlled as we would like for them to be. It can be frustrating, but adult providers need to understand that, in the pediatric world, we don’t have access to all the same medications for arthritis that they do. Therefore, we are careful to give each a good try before switching. It used to be we could actually run out options before the patient is an adult. However, now we do have more options since biologics have burst on to the scene.

Even so we still have many roadblock in getting the right medications to the kids. Many medications are either not indicated for pediatric patients or there’s no pharmacokinetics on the proper dosing for children. Also, insurance companies are being very strict about letting us only give drugs for FDA indications. Each insurance company will require us to dose the same drug for the same condition differently, and usually there’s no research to support their dosing regimen. We often challenge these decisions through peer-to-peer appeals and provide ACR or CARRA research articles to support our decision. Sometimes we get what want, and many times we do not. So, if an adult provider is scratching his or her head wondering why we chose a certain drug or dosing regimen, they should understand that it was most likely not really OUR decision.”

What role can the adult or pediatric nurse play in helping the patients transition? How can they inform adult providers of what they need to know to continue treatment? 

“There are a lot of ways the nurse can be very instrumental in this process. We know that in pediatrics, at least from the adult providers perspective, we tend to coddle our patients. We try to provide a safe, friendly environment for the children because we don’t want them to be afraid when they come in for medical appointments. Through the years, and as they mature, we help them participate much more in the exam and the history-taking portion of appointments. That’s where we start. Their transition to adult care starts years and years before it actually happens.

The nurse on the pediatric side can, during the transition phase, provide a lot of support to the young adult in explaining how the adult system works and helping them navigate it. I encourage my young adult patients to call the adult office to schedule their appointment six months before I know I will be transferring care. I ask the parent to review the process with their child - everything from where to find the name and number to what information they need to have handy because they will be asked for information, such as insurance cards and pediatric rheumatology information. In a lot of cases, even prescription refills can be tricky. A lot of these children don’t understand how to get their medication from the pharmacy, call in for a refill, know how much it should cost out of pocket or how to read the bottle to see if they have a refill. So, the pediatric nurse can be very instrumental in teaching, talking through, supporting and transitioning them in those aspects. Getting biologic refills is another story.

The nurse on the adult side can also be very helpful by understanding that this young adult is still learning how to use the healthcare system independently. They may not have had parents that involved them in making appointments or getting their medications from the pharmacy. For those patients, the nurse can be a resource. If the patient forgets how to do something or isn’t sure what to do, the nurse can be available for a phone call to help walk him or her through the problem.”

Are there other details about patients with juvenile idiopathic arthritis that can help adult providers as they take over care?

“We know that the younger the children are when diagnosed, they’re at a higher risk of eye inflammation, called uveitis. We also see a surprising amount of TMJ arthritis in the children that can be radiographically seen on MRI. I have kids in my practice as young as 8 or 9 who have it. Frequently, parents weren’t even aware of the problem because their kids didn’t realize it was abnormal for it to hurt when eating more difficult-to-chew foods. One of my favorite questions is to ask ‘does it ever hurt when you are chewing steak, meat or Starburst candy?’

For those young adults transitioning, one thing we commonly hear as patients transition to the adult world is a lack of understanding about how appointments work. As a child, if they miss an appointment, we follow up with a phone call, asking why they missed the appointment and if we can re-schedule them. In the adult world, it tends to be if you miss your appointment, you just miss your appointment. No one sends you a letter saying ‘Hey, we missed you.’ It’s up to you to reschedule. Most kids don’t understand that about the adult world, and they look at it as being very harsh and cold. They don’t think their new provider cares. Some follow phone calls for missed appointments for these young adults would go a long way. It’s important to remember that nothing is magic about turning 18. They are still developing cognitively, and we all know they are not fully mature yet. So, let’s help them get to where they need to be and stay as healthy as possible.”

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